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Parkinson's Pundit

Friday February 20, 2015

Parkinson’s is complicated, and complicating. The instant you learn you have this disease, a disease which degrades your ability to deal with complexity, your life becomes more complex. Among the things you now must weigh when making plans, and coping with your new reality is the question “Should I tell people I have PD?” 

There are many good reasons to keep this information to yourself. Privacy, dignity, employability, the desire not to burden others with your troubles, and the wish to go on as normally as possible for as long as possible are all among concerns to consider when thinking this through. You must weigh what you know about yourself and your particular situation carefully before making a decision about what you reveal and to whom. The urge, especially early on, will be to default to keeping it quiet.

Because of some of the peculiarities of Parkinson’s Disease, hiding it may be tougher than you expect. The first peculiarity is the subtle slowness of the transformation the illness brings. You will experience and adjust to change so incremental over time, you may not realize the symptoms are in plain sight to those around you. Friends and family might not attribute your softness of speech or slowness of movement to Parkinson’s. But they will notice, and wonder about it. Second, stress makes PD symptoms, and probably the underlying disease worse. The wear and tear of giving your daily performance in the role of “healthy person” are sure to undermine that performance over time. Third, there are so many ways that Parkinson’s Disease will affect you- movement, thinking, emotional affect- it is difficult to cover all those tracks, especially when your ability to handle complexity is under siege.

Besides the essentially logistical questions above, there is the question of trust. A bitter fact about Parkinson’s Disease is that as time goes by you will be forced to rely on family, friends, and colleagues for more and more as PD degrades your abilities bit by bit. You cannot take on the rigor of living with PD privately forever. While you may believe that you have irreproachable reasons for hiding your affliction from those who are close to you, when the inevitable announcement of the truth arrives, they are bound to wonder why you didn’t let them in to your confidence earlier. The potential for hurt feelings, damaged trust, is real.

There is a simple way to find out if people are trustworthy. Trust them. If my experience is any guide, most will rise to the occasion with strength and understanding that will make you humble. I can’t think of a single time I regret confiding to anyone that I have PD, from my bosses at work to people I just met. Most often there is only honest curiosity and concern about how they may help you manage the disease in the context you share with them. Frequently they have a family member or friend who also has the illness, and may have valuable insight or emotional support to offer. Sharing your diagnosis is a sort of “trust fall”, in which you risk disaster with the hope companions will intervene. If nothing else it’s a good opportunity to raise awareness of Parkinson’s Disease.

What if they don’t rise to the occasion? What if they are frightened, or weak, or too selfish to see you as anything other than a burden? In short, what if you cannot trust them? Well, that is information you need. Even if it is painful, the sooner you find out, the better for both of you.

Peter Dunlap-ShohlPeter Dunlap-Shohl
NWPF Blogger

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